June 17, 2010


ME + me : Animal forum - 1


I am still not well at all and sad,  but will today reproduce something about a subject I still am not much inclined to write about, that I shall name Animal forum, mostly because I like wordplay and because I could do quite a nice spoof using the classical text referred to, namely Animal Farm, that you find under the link on an excellent Russian site about Orwell, with many of his texts and much material about him.

Like yesterday, I have been occupied on the other forum, that still is being surrected. There's a little bit more on it in the P.S. - but here is a bit I wrote today, in exchange with the Welsh Wizard, a very smart and learned man who was one of the scientific lights of the Phoenix Forums, who also wrestled free from the grip of severe ME with the help of Dr. Myhill, and who withdrew from them because he does not like how they have been developing lately.

Quite possibly this is The First Of The New Forums for and by patients with ME to appear In Public - and I allow myself to do so because it does state part of my own reasons for being interested in a good forum for patients with ME, and where I think Phoenix Rising failed, and in particular its owner, administrators and moderators failed (though this is not true of some, notably of those who resigned earlier because they could not agree with how Cort allowed the forums to develop and not to develop.

So what follows is for patients with ME (pwME) mostly; for documentation of my own path; to help some to make up their own minds; and also - see the end - to pinpoint a fairly pure case for the study of power, groupthinking and ordinary men (and women too).

But to my copy of a fresh dialogue:

General Discussion / Re: Banned from PR forum honor roll

 Last post by Maarten Maartensz on Today at 05:22:13 PM 

Hi Gerwyn,
Quote from: Gerwyn on Today at 04:31:38 PM

   I believe that PR was originally set up to create a desperate audience of vulnerable people as a customer base that could be  sold the various patented snake oil treatments which abound in the political quagmire that surrounds our illness.

Personally, I am willing to award more benefit of doubt. Maybe Cort got some help, maybe not, but my own guess is that he started it in good faith, but bit of more than he can chew and made a number of major mistakes, such as picking the moderators he did; protecting them; admitting the 'I am the owner of the house and you are my guests' metaphor (a forum is written by its members); adopting mistaken and ill-formualted rules; allowing his moderators indulging their headmistresses-hangups; being very pliable to CAA-interests; insisting on owning and editing posts of members; making political correctness and phony verbal respect necessary conditions to be allowed to 'discuss' for members; treating as equal what is unequal and as unequal what is equal; being completely untransparent as to moderating, decision-making etc.; imposing Facebook links, advertisements and other things without any discussion and hardly any warning; allowing totally arbitrary 'moderation' and more.

So he tried and failed - and I have not been entering here on specific disagreements I have with him, for I find him anyway a type difficult to judge for me. But surely some others on the PR-forums could have done considerably or very much better in the same position as he was in, and indeed quite possibly with the same original intention (and I am not speaking of myself but of persons like Kim or Koan).

Also, it is fair to remember that PR-F did work fairly well for a number of months, and that there will be squabbles of some kind in any considerable group of diverse people only united by a common illness and most quite anonymous.

As to "a desperate audience of vulnerable people": That's there anyway, Gerwyn, in the form of pwME.

Also, there is another side of the coin, and one reason for me personally to be interested in a good forum for and by patients with ME:

The internet gives opportunities to combine patients with ME, possibly not on one forum but on several, but as a force to be reckoned with by institutions, interest groups and folks with power who for decades were faced with patients only as lone individuals, with little knowledge of their disease and no or few supporters.


It was obviously also  a vehicle to convey political agendas probably originating from the CDC via its sister organisation the CDC.

This I agree with, but that is not only or merely or mostly Cort's doing, or even that of the moderators, but is inherent in the possibilities of any considerable gathering of people of some kind with definite interests:

That is namely a ready audience for many kinds of politicking, in this case especially by various interest groups, such as those of patients, those of real scientists; those of pseudo-scientists; those of sellers of therapies, cures and medicines of many kinds; those of researchers out for using the group in some way ('how do the patients react to'...); those with anything to sell, auction, or popularize, from religion to 'wellness'; those wanting to study 'an internet-community of (this type of) patients'; those out for marketeering info a.s.f. a.s.o.

Also, due to the bad leadership and the bad moderating and the ad libitum allowance of virtually anyone willing to post, various political and other agendas of various groups no doubt have been playing out, secretively mostly, the forum being anonymous nearly completely, and personally I assume on PR there were various staff members of the CDC, the KCL and the CAA both phishing for various kinds of information and trying out opinions and also trying to have major influence over the forums, its directions, and the subjects of discussions and the styles in which these subjects were discussed, and/or also sowing dissent or seeking to fragmentize the forums, simply because the CDC, the KCL and the CAA have a major interest in preventing groups of patients with ME on the internet who can act in a coordinate fashion and oppose them or their favorite policies and public propaganda.

This new forum should have structures in place - clear rules, ends and criterions for membership that allows posting - to prevent such takeover or abuse of a forum for and by patients by the anonymized staffmembers of the CDC, the KCL and the CAA and indeed the idems of various patients interest organizations, who all should do their own politicking and actioneering on their own sites, rather than try to play it out, partially or wholly, by way of patients forums.


I say was because for me it lies in the past.  Personally, I feel  it is time to move on and create the best forum on the internet which has the interests of people with our illness  as paramount.In a sense however I must be grateful to PR because without it I would not have made contact with all the wonderful people who now inhabit this forum

Quite so, Gerwyn.


Thus it was written today, and I have merely copied it, though I have removed some links (not to lead you astray towards Forbidden Forums, of course).

There is much more I could write on the subject of Animal Forum, and perhaps I will, but for the moment I remain not well.

However, one thing I should remark: being a psychologist, among other things, who is interested in human groups, group processes and groupthinking, and also about power  and having mentioned the Stanford Prisoners Experiment and the thread on Phoenix Rising called the title Where has everyone gone? Why is this site so empty? (meanwhile quite heavily censored by The Owner, His Admins or His Mods) I should add that for psychologists interested in the subjects of groups, group processes and groupthinking, and the derailments and corruptions induced by power, even a relatively small, unimportant and limited kind of power, the links in this paragraph are quite interesting and helpful, wholly apart from ME and indeed me.

The reason for this last fact is especially that it all has been written down and indeed also that much derailed in a short time, while - incidentally, much like in real politics and history: see: Barbara Tuchman's aptly named "The March Of Folly" - it is quite striking how the main players in the drama are quite unaware of what they are really doing, and acting out a role regardless of what their acting out achieves, and quite capable of misperceiving and misdescribing palpable facts because they are driven by egoistic and status emotions.

P.S. And the new forum? It's still in the process of being born, as you can see above.

O, and a note on my title, namely Animal forum in case you incline to believing it is disrespectful, inappropriate, incorrect or meant to disparage a large group of people: Not at all, and indeed as little as Orwell, as you can see for yourself if you read Animal Farm : it's been pretty awfully common human-all-too-human throughout history.

To quote a tasty appropriate bit I was reminded of, among quite a few other things, that also justifies my title:

"Orwell marked this passage in a copy he gave to Geoffrey Gorer, telling him that it was the key passage" en dat "all the pigs were in agreement on this point, even Snowball and Napoleon:"

'Comrades!' he cried. 'You do not imagine, I hope that we pigs are doing this in a spirit of selfishness and privilege? Many of us actually dislike milk and apples. I dislike them myself. Our sole object in taking these things is to preserve our health. Milk and apples (this has been proved by Science, comrades) contain substances absolutely necessary to the well-being of a pig. We pigs are brain-workers. The whole management and organization of this farm depend on us. Day and night we are watching over your welfare. It is for your sake that we drink that milk and eat those apples.'

From: Bernard Crick: "George Orwell - A Life" p. 490.

As to ME/CFS (that I prefer to call ME):

1. Anthony Komaroff

Ten discoveries about the biology of CFS (pdf)

3. Hillary Johnson

The Why

4. Consensus (many M.D.s) Canadian Consensus Government Report on ME (pdf)
5. Eleanor Stein

Clinical Guidelines for Psychiatrists (pdf)

6. William Clifford The Ethics of Belief
7. Paul Lutus

Is Psychology a Science?

8. Malcolm Hooper Magical Medicine (pdf)

Short descriptions:

1. Ten reasons why ME/CFS is a real disease by a professor of medicine of Harvard.
2. Long essay by a professor emeritus of medical chemistry about maltreatment of ME.
3. Explanation of what's happening around ME by an investigative journalist.
4. Report to Canadian Government on ME, by many medical experts.
5. Advice to psychiatrist by a psychiatrist who understands ME is an organic disease
6. English mathematical genius on one's responsibilities in the matter of one's beliefs:
   "it is wrong always, everywhere, and for anyone, to believe anything upon
     insufficient evidence
7. A space- and computer-scientist takes a look at psychology.
8. Malcolm Hooper puts things together status 2010.

"Ah me! alas, pain, pain ever, forever!

No change, no pause, no hope! Yet I endure.
I ask the Earth, have not the mountains felt?
I ask yon Heaven, the all-beholding Sun,
Has it not seen? The Sea, in storm or calm,
Heaven's ever-changing Shadow, spread below,
Have its deaf waves not heard my agony?
Ah me! alas, pain, pain ever, forever!
     - (Shelley, "Prometheus Unbound") 

    "It was from this time that I developed my way of judging the Chinese by dividing them into two kinds: one humane and one not. "
     - (Jung Chang)

See also: ME -Documentation and ME - Resources

P.P.S. ME - Resources needs is a Work In Progress that hasn't progressed today.

Maarten Maartensz

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